Lily Bailey has the poised elegance – on first, second and third glance – of someone you’d imagine has a very firm handle on life. She’s strikingly beautiful for a start: with the etched cheekbones, Snow White skin, haunting eyes and over-sized eyebrows befitting a catwalk model. She is a model – of course she is. And a journalist. And she has recently published a book. And she’s only 24.

She’s the kind of woman you could easily dismiss as sorted, indulgently lucky. A person like her couldn’t possibly have a mental disorder, could she? But, of course, looks can be deceiving and mental health issues such as hers are often surprisingly invisible to unsuspecting eyes.

“I was overwhelmed by how many people said they’d been through something similar.”

Bailey has suffered from crippling obsessive compulsive disorder (OCD) since she was a child, when she simply believed she was “bad”. By the age of 13, she had committed unspeakable crimes: in her mind, she had killed someone just by thinking it, spread gruesome disease and ogled the bodies of other children. Only by performing exhausting series of secret routines or making lists of the bad things she’d supposed to have done could she correct her wrongdoing – and it wasn’t long before her OCD had spiralled out of control and taken over her life.

The more you tell yourself not to think something, the more you think it, Bailey explains. “So begins a pattern of really uncomfortable and intrusive thoughts, such as ‘I might kill someone,’ or ‘I might abuse someone,’ or ‘I might start a fire.’” Such shocking thoughts are very common, she says. “But if you don’t know that they’re linked to OCD, you’re very unlikely to tell anyone about them, as you believe you’ll end up in jail or an asylum.” So things quickly get worse and worse, she says.

“Most of us have stood on a platform and thought: ‘What if I pushed someone?’” I raise my eyebrows in surprise. “Obviously, we don’t do that and most people don’t think about it again,” Bailey quickly adds. “But a person with OCD feels hugely anxious about that thought.” She inhales deeply, trying to find a way to explain. “People with OCD are basically the opposite end of the spectrum to psychopaths. They tend to be very conscientious, anxious, compassionate and empathetic.”

So what is OCD, exactly? The NHS definition defines an obsession as “an unwanted and unpleasant thought, image or urge that repeatedly enters a person’s mind, causing feelings of anxiety, disgust or unease”; a compulsion is a “repetitive behaviour or mental act that someone feels they need to carry out to try to temporarily relieve the unpleasant feelings brought on by the obsessive thoughts”. Some people with OCD may spend an hour or so a day engaged in obsessive-compulsive thinking and behaviour, but for others the condition can completely take over their life.

“I was preoccupied with compulsively making mental lists of bad things I thought I had done. Say I’m with a friend walking down the road. I suddenly worry that I haven’t walked in a straight line and it looked weird, so then I take the letter ‘W’ for ‘walk’ and put it on the list. Then my friend says something that I think is supposed to be funny, so I smile – ‘S’ – but then I wonder whether that was the right reaction. Then she comes too close to me and I worry I smell – ‘S”. Then we pass a child and I worry that it might have looked like I looked at the child’s bum – ‘B’ – and that it got caught on CCTV and I’m going to get arrested.

“So then I’m chanting ‘WSSB, WSSB, WSSB’ in my head and trying to analyse those letters. That’s my list in the space of about a minute, so you can see how it would be easy to end up with lists from the day that were hundreds of letters long.”

Bailey’s book, Because We Are Bad: OCD and a Girl Lost in Thought, recounts what it’s like to live with an almost intolerable burden. And she’s certainly not alone. OCD affects more than 600,000 people in the UK. The World Health Organisation lists it among the top 10 “most disabling conditions in the world”, in terms of diminished quality of life and loss of income.

Bailey is pleased with the book’s reception. “I thought people might say: ‘Well, she’s clearly a nutter,’” she laughs. “But I was overwhelmed by how many said they’d been through something similar. People told me: ‘I’ve lived with this and didn’t know what it was; I just thought I was weird.’”

Bailey was 16 when she was diagnosed, despite having lived with the condition throughout her childhood. “I’d developed a real obsession that I was bad or that something bad was going to happen. When I was younger, the compulsions were more physical: checking that my sister was breathing, as I thought she’d die in her sleep. And I’d tap my feet
non-stop.”

As she got older, the compulsions became more mental, largely due to the fact that people noticed the physical stuff. “My dad would say to me: ‘Stop bloody fidgeting.’ It must have been so annoying to watch. My school friends would mimic my actions, which made me aware that what I was doing was bad.”

So she internalised her compulsive actions. “I started to make lists in my head of the things I’d done that were bad. It actually made my OCD worse because there was nobody to say: ‘Stop doing that!’”

When she was first diagnosed, she was surprised that her condition had a name. “The behaviour for me felt normal, because I’d been thinking in an obsessive and compulsive way all my life. When I told my friends, one said: ‘Well, I’m glad it’s just that, because I’ve been really worried about you.’ But actually, think about how disabling it is to be completely obsessed and have to perform mental or physical actions for basically every waking hour – there’s no respite.”

Nobody knows what causes OCD. It could be hereditary or environmental. “My dad had OCD traits as a child.
He’d like things to be done in fours and would have his dad scratch his back 100 times, or he thought something bad would happen. But he struggled to accept my diagnosis. Often, the people who had it themselves find it hard to understand, as they simply grew out of it.”

Her parents didn’t always get on too well with each other.

“Some sufferers with OCD point to a particular traumatic event or stressful period as the thing that ‘caused’ their OCD. I don’t remember ever not having OCD, so it’s hard for me to point to a direct cause. However I do remember my compulsions becoming worse when I was stressed. My parents’ relationship was stressful to witness, so in that way it probably did contribute to creating more anxiety and perpetuating the compulsions.”

Misunderstanding of the condition is rife. The result is that it’s not always understood or treated sympathetically. Bailey sighs. “People sometimes think I’m a millennial snowflake,” she says. But you wouldn’t say that to someone with a physical health condition, she points out.

Bailey (right) was crippled by OCD as a child. Main image: Amy Shore

“I’ve never met two people with the same type of OCD. One misconception is that everyone is a bit OCD. They’re not. That’s like saying that everyone’s a bit depressed because people get sad. Everyone can perhaps obsess or have a few compulsions – but the key to it is ‘disorder.’”

Television doesn’t help, she explains, saying that clichéd interpretations of OCD lead people to believe it’s all about being a perfectionist. “Some people do have OCD that relates to symmetry and tidiness, but they don’t like tidying and straightening things – they’re actually really distressed by it.”

Is she saying we should never laugh about OCD? “Not at all! I do laugh about it, because humour can be a glimmer of light. Frankly, the things I’ve done because of my OCD are, to look at now, hilarious.”

I’m intrigued. Bailey explains the excruciating mishaps she’s experienced because of her condition. “Once, I was making tea for people I worked with – and I became totally gripped by this idea that I’d pissed in all the mugs. I had to remake all the tea. Another time, when I worked in a nursery, I had to unwrap a load of presents the kids made for their mums on Mother’s Day, because I was thinking I’d written offensive notes to all the parents or put arsenic in their biscuits. It’s completely bat-shit stuff, that, to look at now. I can’t believe I thought that.” She laughs and cringes at the same time.

Now she has good days and not-so-good days. Her goal is not that she magically gets better. “I wouldn’t want that to be my gold standard – because I’d feel bad if I didn’t get there. For me, it’s all about enjoying my life more.”

Bailey’s advice for anyone who thinks they may have OCD, or who has been diagnosed but feels overwhelmed, is to reach out. “Access CBT through the NHS. In the meantime, go to a support group. If you don’t have one nearby, set one up, because you’d be surprised by how many people want one. OCD Action and OCD-UK are proactive at helping people to do that.

“I had misconceptions when I went to an OCD support group – I thought everyone would be sitting on newspaper because they wouldn’t want to touch the chairs, or be wearing gloves, shuffling their feet or tapping. But of course, it wasn’t like that – and there was nothing to suggest it was a group for sufferers of OCD.”

Another step, naturally, is to see your doctor. “If you have intrusive sexual thoughts or thoughts about violence, and you’re worried that the GP may misunderstand you, visit OCD-UK to download a letter to take with you, which says that what you’re experiencing is a symptom of a very common mental health condition and you’re in no way dangerous.” She is adamant that people don’t suffer in silence. “I’d advise people to grab the bull by its horns, even if it feels utterly terrifying.”

Now, amid a busy life, Lily works to raise awareness and volunteers with people with disabilities. “I joined a tandem bicycle-riding club for visually impaired people. I ride at the front as the pilot.” It’s quite a different pace from the whirlwind of modelling and writing, but she thoroughly enjoys it.

Ultimately, Bailey has no regrets about her OCD. She admits that she doesn’t know who she’d be if it hadn’t touched her life. “Maybe I’d have been a real bitch without it,” she smiles with a little shrug.

OCD has taught her many lessons – many of them about vulnerability and being human. “It’s difficult to know what’s going on for people; even someone you’re close to. I was able to hide my OCD for so long. Humans are good at covering up our actual realities. OCD has shown me that we all wear masks. The baseline assumption we all make is that if someone is smiling, everything is OK.”

It’s just not true, she says. The key to combating that, she adds, is kindness.